The Problem with Invoking Down Syndrome in Support of the American Health Care Act

From the moment the American Health Care Act won passage in the House of Representatives, a child with Down syndrome was going to be marshaled in its favor: supporters of the bill needed a sentimental distraction from the AHCA’s likely impact on people with disabilities.

What I didn’t expect was that the first example would come from a parent who voted for the bill.

Like me, and like many thousands of people in the United States, Cathy McMorris Rodgers (R-WA) has a child with Down syndrome, whom she loves and to whom she is devoted. On the day after the bill’s passage, she published an op-ed in the Washington Post: “My son has a preexisting condition. He’s one of the reasons I voted for the AHCA.”

In the article, she refers to Jimmy Kimmel, who asserted–in a monologue about his son’s heart surgery, since gone viral–that “if your baby is going to die and it doesn’t have to, it shouldn’t matter how much money you make.” On hearing the monologue, Rodgers writes, she “had a flashback to the day [her] son was born and [she] learned he had Down syndrome.” She also implies that early on, she faced the worry of not having insurance: “My husband and I had a lot of questions about Cole’s future. Whether he’d have health care shouldn’t have had to be one of them” [emphasis mine].

If enacted, even in watered-down form, the AHCA will be catastrophic for many, and people with Down syndrome will only be a fraction of those affected. Still, the condition provides a useful lens on the law. It is, by definition, pre-existing. It is associated with a greater risk of health problems. And it is a disability: many people with Down syndrome depend on Medicaid, whose funding is drastically cut under the bill.

Rodgers implies, but does not say, that she feels the pain of those who worry about losing healthcare. “All across the country,” she writes, “families like mine have real concerns about the future of health care, and they are why we’re focusing on results and working on these reforms.” But Rodgers almost certainly has two options for high-quality insurance: one through her job in Congress, and the other through her husband, who is retired from the Navy.

In Rodgers’s arguments, we see the false-populist version of healthcare: the politician, asserting a deep link with the common people. But the link is purely rhetorical. The rich and the poor, the insured and the uninsured, do not face the same issues in the same way. It’s a sharp divide, and Rodgers’ words tend to obscure it.

Rodgers has the politician’s instinct for the tactical blur: she blurs the lines between haves and have-nots, left and right. She speaks the language of the left: vulnerable, communities. She avoids stridency, choosing a nonspecific empathy: “When you’re facing years of doctor’s appointments,” she writes, “you want to know that having a preexisting condition, such as an extra 21st chromosome or a heart defect, won’t prevent you or your loved ones from accessing the care you need.” (Access, as many have noted, has been a Republican talking point all along, and access is not identical with affordable care.)

The you invoked by Rodgers is rhetorical, not real. It’s the you of sales and persuasion. It joins the reader, the unnamed “families like mine,” and a world of nonspecific reassurance. This is a consistent pattern in her op-ed, which triangulates between three points: Caring Republicans, Regular Folks, and Positive Feelings.

It’s the people we love — our children, friends and neighbors — who are the inspiration behind our American Health Care Act…

…We’re focusing on results and working on reforms…

…We’re working hard to build a health-care system that puts the American people back at the center of their health decisions…

…We’ve passed a bill that we’re confident will improve lives…

…We have not lost sight of our responsibility to the most vulnerable in our communities…

…To me, protecting people with preexisting conditions isn’t just good policy — it’s a personal mission.

This is the language of feelings and good intentions, spoken with the bland, anonymized voice of an annual report: The people we love. Inspiration. Focusing on results. We’re working hard. We’re confident. We have not lost sight. But these assertions distract from the real issue: the likely impact of the bill, should it actually become law.

Among other provisions, the bill allows states to opt out of rules prohibiting insurers from charging higher premiums for people with pre-existing conditions. The high-risk pools that are supposed to help pay the higher premiums are woefully underfunded.

As Paul Daugherty — author, sportswriter, parent of a young woman with Down syndrome — writes on his website, “those in the ‘high-risk’ category could be charged prohibitively high rates. Combine that with the decimation of Medicaid and some people would be priced out. Such as my daughter.” Hallie Levine, a single mother of three, one of whom has Down syndrome, had this to say at refinery29.com:

The AHCA in its current form decimates Medicaid, which will not only provide health coverage for my daughter Johanna — Jo Jo — when she’s an adult but also the support she will need to live and work independently. Medicaid also covers some of the costs for special education services for her school system, something else which is now on the chopping block.

But what’s even more upsetting to me, the parent of a child with disabilities, than trying to take away health care from millions of Americans, including children like mine, is using your child with Down syndrome as a political pawn to justify it.

Jisun Lee‘s family was priced out of insurance when her husband changed jobs. She went without. As she wrote to me, after her first child was born, “I had (and thankfully passed on my own) gallstones … and never went to the doctor, because I was afraid of bankrupting my family.” Her third child was born with Down syndrome:

We signed him up for his own plan and cashed out a third of our retirement to pay for his medical care during the first year, and he was actually pretty healthy. No surgeries, no ER trips. But the echocardiograms to check on his heart and lab work deductibles to check his thyroid levels alone ended up being thousands of dollars. EVEN WITH INSURANCE.

That year was the year that the ACA exchanges started. We signed up immediately. Yes, the rates have gone up. Yes, I have complaints about the way the exchanges are run. We live in a more rural area now and I understand the challenges that some of the GOP congress members are talking about.

But we have insurance.

Jisun’s story is a good reminder that we can’t focus on the child with Down syndrome alone. A family is a system, and anything that affects one member affects everyone.

Another friend, Meriah Nichols, is a blogger, activist, and mom of four, including Moxie, who has Down syndrome. She’s also deaf, deals with PTSD, and is the survivor of childhood sexual abuse. Her story is too long to repeat here, and it feels like a violence to summarize it. But it’s a must-read, not only for her honest account of crisis, but for the way in which Medicaid makes her life possible:

When we arrived back in California, I knew I needed steady help and I signed myself up for Medicaid.

Since being on Medicaid, I’ve been able to access steady therapy, medications. I have been able to function and be more healthy than I probably ever have been in my life.

The idea of being without access to health care or medication throws me into paroxysms of paralysis. You don’t understand — or you do if you also have triggers — this stuff gets going and I can’t work through it.

With Medicaid, I’m able to hook up with flexible work options and pay into the system. I can do things like run this blog, like teach part time at my kid’s school. I can paint and clean house and be functional.

I am a contributing member of society with Medicaid; as a social welfare program, I tell myself that I’m worth the investment of our tax dollars because I give back, I try hard, I care about others.

Yet, despite knowing that I try, that I give back, etc, I still feel that pervasive feeling of defensiveness bordering on being embarrassed. Why? I mean, why do I feel this?

I’ve quoted these voices at length because their specificity offers a useful counter to Rodgers’s pastel reassurances. I’ve limited myself to parents of people with Down syndrome, because that’s the community I know best. But the point isn’t Down syndrome: it’s vulnerability, which has many sources and many forms. Writing in the New YorkTimes recently (“My Medicaid, My Life”), disability rights activist Alice Wong said it this way:

When you are disabled and rely on public services and programs, you face vulnerability every day. This vulnerability is felt in my bones and my relationship with the state. Fluctuations in the economy and politics determine whether my attendants will receive a living wage and whether I’ll have enough services to subsist rather than thrive. The fragility and weakness of my body, I can handle. The fragility of the safety net is something I fear and worry about constantly.

The AHCA’s passage in the House is the outcome of a long siege against Obamacare and Obama himself. Down syndrome has been effectively weaponized at key points in the war.

Sarah Palin, invoking her son, famously claimed that Obama’s plans included “death panels” for the aged and disabled. Then as now, a parent’s earned authority — and the sentimental, cross-party appeal of kids with Down syndrome — were deployed to neutralize objections.

There are differences, of course. Palin lied outright: there were no death panels. Rodgers does not lie, she merely misleads. In both cases, Down syndrome is offered up to establish credibility, and to shift the ground from thought to emotion. But emotion is not enough. What’s at stake is our interdependence, and the fact that — like any of the parents I’ve quoted above — we, too, are vulnerable. Michael Bérubé makes this point eloquently in Life as Jamie Knows It, his recent book about his younger son, Jamie, who has Down syndrome:

So the next time we talk about health care in the United States — which should be today, tomorrow, and every day thereafter — we should take a moment to think of people like Jamie and all the people who have helped him along the way … .And of course, we all need some degree of help in order to become independent: that’s one of the paradoxes by which we live. But in Jamie’s case, dear reader, if you are one of our fellow Americans, then some of that help was provided by you. You should be proud of that, and you should know that Jamie and his family are ready and willing to return the favor, should any of nature’s mishaps happen to you.

The AHCA would do nothing to help the vulnerable, and much to harm them. Rodgers’ op-ed obscures that fact by invoking her son. As a rhetorical device, his presence provides credibility, links her family to families at risk, and personifies the vulnerability many of us feel. But most of all, he functions as a distraction.

The real issues aren’t chromosomal. They’re economic. Millions of people who don’t have Down syndrome, who aren’t disabled, are also at risk, because — as many have noted — it’s a mistake to even consider the AHCA a health care bill at all. In March, Timothy Jost, of the Washington and Lee University School of Law, wrote that “the real focus of the legislation is not on health-care reform, not even on repealing the ACA as such. What the AHCA would in fact do is massively redistribute wealth from the poorest Americans to the wealthiest.” Jamelle Bouie, chief political correspondent for Slate,writes that the AHCA “isn’t a health care bill as much as it is a vehicle for upward redistribution, taking from the bottom to give to the very top.”

That redistribution would do more than harm vulnerable populations: it would create them. Because the bill was passed without being evaluated by the Congressional Budget Office, we don’t have exact projections; but, according to Sarah Kliff at Vox, “[w]hen the CBO last scored AHCA, it estimated that the bill would cause 14 million people to lose health insurance coverage. Any new estimates will likely be similar, as the Medicaid portions of the bill have not changed significantly through congressional negotiations.”

Loss of coverage on that scale will produce misery in proportion. That misery is avoidable, and it will fall on the vulnerable populations about whom Rodgers claims to care. When we think of the AHCA, they are the ones we need to bear in mind.